Fragile X Clinic Finder (original) (raw)

The Fragile X Clinic Finder tool lists U.S. clinics for Fragile X syndrome and FXTAS. For clinics and support organizations outside of the U.S., see our International Clinics. If you have questions or want to share your comments (all feedback is welcome), we’d love to hear from you!

Jump to the Clinic Finder

Fragile X clinics provide medical services (including medication evaluations and consultations) supervised by a physician and supported by the latest medical, educational, and research knowledge available. Multidisciplinary services, such as genetic counseling and occupational, speech, language, and behavioral therapies, are also available either at the clinic or by referral.

The NFXF works closely with the National Ataxia Foundation (NAF) to identify clinics that specialize in ataxia – a neurological condition characterized by the loss of muscle coordination, primarily affecting balance and movement. The listed NAF sites, while not specializing in FXTAS, have indicated that they have experience treating FXTAS patients. The NFXF has provided them with FXTAS and general Fragile X related materials. Families may find the NAF clinics helpful for their ataxia related problems.
NAF ataxia sites on the FXTAS clinic finder will have a note that they are an Ataxia Center of Excellence.

Each listing includes the ages treated at that location. All FXS clinics treat children and teens ages 0–18. Some clinics treat ages 0–21. Some treat all ages. FXTAS clinics treat all ages.

This label is provided for those who wish to join the FORWARD-MARCH study via a participating clinic.

The Fly with Me Fund offers financial assistance for eligible families to travel to a Fragile X member clinic. Learn more.

Find a Clinic Near You

NFXF Clinic Results

FXS

Ages 0-18

Ages 19-21

Ages 22+

Atlantic Health System at Morristown Medical Center

Fragile X Center

100 Madison Avenue
Suite 201
Morristown, New Jersey, 07960
United States

Member of the Fragile X Clinical & Research Consortium

Team

Darius J. Adams, MD

Medical Director

Robin Godshalk, MS, MHA, LGC, CGC

Clinic Coordinator

FXS

Ages 0-18

Ages 19-21

FORWARD participant

Boston Children’s Hospital

Fragile X Program

2 Brookline Place
4th Floor
Brookline, Massachusetts, 02445
United States

Member of the Fragile X Clinical & Research Consortium

Team

Lisa Prock, MD, MPH

Research Director

Jonathan Picker, MBChB, PhD

Clinical Director

FXS

Ages 0-18

Children’s Health & UT Southwestern Medical School

Center for Autism Care and Developmental Disabilities

1341 W. Mockingbird Lane
Suite 240W
Dallas, Texas, 75235
United States

Member of the Fragile X Clinical & Research Consortium

Team

Patricia Evans, MD, PhD, FAAN, FAAP

Medical Director

Mary Ann Morris, PhD

Clinic Coordinator

FXS

Ages 0-18

Ages 22+

Ages 19-21

FORWARD participant

Children’s Hospital Colorado

Fragile X Clinic at Children’s Hospital Colorado

13123 East 16th Avenue
Suite B140
Aurora, Colorado, 80045
United States

In conjunction with Tracy Stackhouse, MA, OTR, Developmental Fragile X Center

Member of the Fragile X Clinical & Research Consortium

Team

Nicole Tartaglia, MD

Medical Director

Susan Howell, MS, MBA, CGC

Clinic Coordinator

FXS

Ages 0-18

Ages 19-21

Childrenʼs Hospital New Orleans

Fragile X Clinic

210 State Street
New Orleans, Louisiana, 70118
United States

Member of the Fragile X Clinical & Research Consortium

Team

Susan Fielkow, MD

Clinic Director & Coordinator

FXS

Ages 0-18

Ages 19-21

FORWARD participant

Children’s Hospital of Orange County

Fragile X Program, Thompson Autism and Neurodevelopmental Center

170 South Main Street
Orange, California, 92868
United States

Member of the Fragile X Clinical & Research Consortium

Team

Sailaja Golla, MD

Fragile X Clinic Director

Debbie Bunch

Clinic Coordinator

FXS

Ages 0-18

Children's Hospital of Philadelphia

Specialty Care Center

3550 Market Street
3rd Floor
Philadelphia, Pennsylvania, 19104
United States

Member of the Fragile X Clinical & Research Consortium

Team

Amanda Bennett, MD, MPH

Medical Director

Carmen Thomas

Program Coordinator

FXS

Ages 0-18

Ages 19-21

Ages 22+

FORWARD participant

Children’s National Health System

Children’s National Fragile X Clinic

6883 4th Street NW
Washington, DC, 20012
United States

Member of the Fragile X Clinical & Research Consortium

Team

Sinan Omer Turnacioglu, MD

Medical Director

Naterra D. Walker, NP

Nurse Practitioner

Srika Amin, MMSc, CGC

Clinic Coordinator

FXS

Ages 0-18

Ages 22+

Ages 19-21

FORWARD participant

Cincinnati Children’s Hospital Medical Center

Cincinnati Fragile X Research and Treatment Center

3333 Burnet Avenue
Cincinnati, Ohio, 45229
United States

Member of the Fragile X Clinical & Research Consortium

Team

Craig Erickson, MD

Medical Director

Karen Manter

Clinic Coordinator

FXS

Ages 0-18

Duke University Medical Center

Child Development Program, Lenox Baker Children’s Hospital

3000 Erwin Road
Durham, North Carolina, 27705
United States

Member of the Fragile X Clinical & Research Consortium

Team

Alice Bryn Salter, MD

Medical Director

Alicia Russell

Clinic Coordinator

FXS

Ages 0-18

Ages 19-21

FORWARD participant

Emory University School of Medicine

Fragile X Syndrome Clinic, Department of Human Genetics

1365 Clifton Road
NE, TEC Building B, Suite 2200
Atlanta, Georgia, 30322
United States

Member of the Fragile X Clinical & Research Consortium

Team

Amy Tallboy, MD, FAAP

Medical Director

Jean Luan McColl, MS, CCRC

Clinical Research Coordinator

Hailey Dennis, MMSc, CGC

Licensed, Certified Genetic Counselor

FXTAS

Ages 0-18

Ages 22+

Ages 19-21

Emory University School of Medicine, Dept. of Human Genetics

Stephen T. Warren National Fragile X Center at Emory

1462 Clifton Road
Suite 300
Atlanta, Georgia, 30322
United States

Member of the International FXTAS Consortium

Team

Laura Scorr, MD

Medical Director

Lisa Shubeck

Clinic Coordinator

FXS

Ages 0-18

Ages 19-21

Ages 22+

FORWARD participant

Fragile X Spectrum Disorder Clinic at Mount Sinai

Fragile X Spectrum Disorder Clinic

1428 Madison Avenue
Atran Building, 1st Floor
New York, New York, 10029
United States

Mailing Address: One Gustave L. Levy Place, Box 1497, New York, NY 10029

Member of the Fragile X Clinical & Research Consortium

Team

Mafalda Barbosa, MD, PhD

Medical Director

Ashley Daniels

Clinic Coordinator

Erika Levine

Genetic Counselor

FXS

Ages 0-18

Ages 22+

Ages 19-21

FORWARD participant

Geisinger Department of Developmental Medicine

Geisinger Fragile X Center

120 Hamm Drive
Suite 2A
Lewisburg, Pennsylvania, 17837
United States

Member of the Fragile X Clinical & Research Consortium

Team

Thomas H. Challman, MD

Medical Director

Barbara Haas-Givler, MEd, BCBA

Clinic Director

Makenzie Woltz

Clinic Coordinator

FXS

Ages 0-18

Ages 19-21

Ages 22+

FORWARD participant

Greenwood Genetic Center

Fragile X Syndrome Clinic, Greenville Office

14 Edgewood Drive
Greenville, South Carolina, 29605
United States

Member of the Fragile X Clinical & Research Consortium

Team

Carrie Buchanan, MD

Clinic Director

Nicole Johnston

Clinic Coordinator

FXTAS

Ages 0-18

Ages 19-21

Ages 22+

Icahn School of Medicine at Mount Sinai

Fragile X Spectrum Disorder Clinic

1428 Madison Avenue
Atran Building, 1st Floor
New York, New York, 10029
United States

Member of the International FXTAS Consortium

Team

Reymundo Lozano, MD, MS

Medical Director

Christy Flores

Clinic Coordinator

FXS

Ages 0-18

Ages 22+

Ages 19-21

FORWARD participant

Kennedy Krieger Institute

FMR1 and Related Conditions Clinic

801 N. Broadway
Baltimore, Maryland, 21205
United States

Member of the Fragile X Clinical & Research Consortium

Team

Constance Smith-Hicks, MD, PhD

Co-Director

Wilfreda Lindsay, MD, MS

Co-Director

Angela Tanner

Clinic Coordinator

FXTAS

Ages 22+

Massachusetts General Hospital

Department of Neurology, P+A+MSA Clinic

Boston, Massachusetts,
United States

NAF Ataxia Center of Excellence

Team

FXS

Ages 0-18

Ages 19-21

Ages 22+

FORWARD participant

MemorialCare Miller Children’s & Women’s Hospital Long Beach

Stramski Children’s Developmental Center

2651 Elm Avenue #205
Long Beach, California, 90806
United States

Member of the Fragile X Clinical & Research Consortium

Team

Gary S. Feldman, MD

Medical Director

Carla Calderon, FNP-BC

Clinic Coordinator

FXS

Ages 0-18

Ages 19-21

Ages 22+

MetroHealth Medical Center

MetroHealth Fragile X Clinic

7800 Pearl Road
Middleburg Heights, Ohio, 44130
United States

Member of the Fragile X Clinical & Research Consortium

Team

Charron Lewis, MD

Medical Director

Claudia Santos

Clinic Coordinator

FXTAS

Ages 22+

Northwestern Medicine

Department of Neurology, Feinberg School of Medicine

Chicago, Illinois,
United States

NAF Ataxia Center of Excellence

Team

Rizwan S. Akhtar, MD, PhD

FXS

Ages 0-18

Norton Children’s Developmental Center and Norton Children’s Genetics Center

The Norton Center Fragile X Clinic

411 East Chestnut Street
Level 2
Louisville, Kentucky, 40202
United States

When calling the main phone line, ask for ext. 50174.

Member of the Fragile X Clinical & Research Consortium

Team

Joseph Hersh, MD

Medical Director

Jeanie Hammond, LCSW

Clinic Coordinator

FXS

Ages 0-18

Ages 19-21

Ages 22+

FORWARD participant

NYS Institute for Basic Research in Developmental Disabilities

George A Jervis Clinic

1050 Forest Hill Road
Staten Island, New York, 10314
United States

Member of the Fragile X Clinical & Research Consortium

FXS

Ages 0-18

FORWARD participant

Phoenix Children’s Hospital

Fragile X Clinic

1919 E. Thomas Road
Ambulatory Building
Phoenix, Arizona, 85016
United States

Member of the Fragile X Clinical & Research Consortium

Team

Dannah Raz, MD

Medical Director

Nicole Del Col

Clinic Coordinator

FXS

Ages 0-18

Ages 19-21

Ages 22+

FORWARD participant

Rush University Medical Center

Fragile X Clinic and Research Program, Fragile X-Associated Disorders Program

1725 West Harrison Street
Suite 718
Chicago, Illinois, 60612
United States

Member of the Fragile X Clinical & Research Consortium

Team

Elizabeth Berry-Kravis, MD, PhD

Medical Director

Milica Milic

Clinic Coordinator

Angel Wang

Clinic Research Coordinator

Stella Boekman

Clinic Research Coordinator

FXTAS

Ages 0-18

Ages 19-21

Ages 22+

Rush University Medical Center

Rush University FXTAS Clinic

1725 West Harrison
Suite 755
Chicago, Illinois, 60612
United States

Member of the International FXTAS Consortium

Team

Deborah Hall, MD, PhD

Medical Director

FXS

Ages 0-18

Ages 19-21

Ages 22+

FORWARD participant

Rutgers Robert Wood Johnson Medical School

Child Health Institute of New Jersey, Division of Pediatric Medical Genetics

89 French Street
New Brunswick, New Jersey, 08901
United States

Member of the Fragile X Clinical & Research Consortium

Team

Milen Velinov, MD, PhD

Medical Director

Felicia Balsamo

Clinic Coordinator

FXS

Ages 0-18

Ages 19-21

Ages 22+

Stanford Medicine Children’s Health

Behavioral Neurogenetics Clinic

730 Welch Road
Palo Alto, California, 94304
United States

Member of the Fragile X Clinical & Research Consortium

Team

Allan Reiss, MD

Medical Director

Lucia Gutierrez

Clinic Coordinator

FXS

Ages 0-18

FORWARD participant

Texas Children’s Hospital and Baylor College of Medicine

Fragile X Clinic, The Meyer Center for Developmental Pediatrics and Autism

8080 N. Stadium Drive
Houston, Texas, 77054
United States

Member of the Fragile X Clinical & Research Consortium

Team

Holly K. Harris, MD

Clinic Chief and Developmental-Behavioral Pediatrics Specialist

Diane Treadwell-Deering, MD

Developmental Pediatrician

Dinah Godwin, LCSW-S

Social Worker

FXTAS

Ages 22+

UAB Medicine

Department of Neurology, Division of Movement Disorders

Birmingham, Alabama,
United States

NAF Ataxia Center of Excellence

Team

Note: *Call The Kirklin Clinic for appointments

FXS

Ages 0-18

Ages 19-21

Ages 22+

FORWARD participant

UC Davis Health System

Fragile X Research and Treatment Center, UC Davis MIND Institute

2825 50th Street
Sacramento, California, 95817
United States

*Physician’s Referral: 1-800-482-3284

Member of the Fragile X Clinical & Research Consortium

Team

Randi Hagerman, MD

Medical Director

FXTAS

Ages 0-18

Ages 19-21

Ages 22+

UC Davis Health System

Genotype-Phenotype Relationships in Fragile X Families, Fragile X Research and Treatment Center

2825 50th Street
Sacramento, California, 95817
United States

Member of the International FXTAS Consortium

Team

Randi Hagerman, MD

Medical Director

Note: Research-Only Clinic: Patients need to meet specific research criteria for clinics designated as research-only. We are recruiting males and females with the premutation (ages 55-85 years) who have symptoms of FXTAS.

FXTAS

Ages 0-18

Ages 22+

Ages 19-21

UC Health

UCHealth Neuroscience Center

1635 Aurora Court Anschutz Outpatient
Aurora, Colorado, 80045
United States

Member of the International FXTAS Consortium

Team

Emily Forbes, DO

Medical Director

Marrisa LaFreniere, CGC

Clinic Coordinator

FXS

Ages 0-18

Ages 19-21

University of Iowa Stead Family Children’s Hospital

Center for Disabilities and Development

200 Hawkins Drive
Iowa City, Iowa, 52242
United States

Member of the Fragile X Clinical & Research Consortium

Team

Dianne McBrien, MD

Medical Director

Note: For referral to adult care, phone 319-353-6900 and ask for Stephanie Bagley.

FXS

Ages 0-18

Ages 19-21

University of Kansas Medical Center

Center for Child Health & Development, Division of Developmental and Behavioral Pediatrics

3901 Rainbow Boulevard
Mail Stop 4003
Kansas City, Kansas, 66160
United States

Member of the Fragile X Clinical & Research Consortium

Team

Michael Slogic, MD

Director

Stephanie Coleman

Clinic Coordinator

FXTAS

Ages 22+

University of Kansas Medical Center

Department of Neurology, Landon Center on Aging

Kansas City, Kansas,
United States

NAF Ataxia Center of Excellence

Team

Ages 0-18

Ages 19-21

Ages 22+

FORWARD participant

University of Massachusetts Medical School & Memorial Health Care

Center for Autism and Neurodevelopmental Disorders

100 Century Drive
Worcester, Massachusetts, 01606
United States

Member of the Fragile X Clinical & Research Consortium

Team

Isha Jalnapurkar, MD

Medical Director

Elizabeth Turenne

Clinic Coordinator

FXTAS

Ages 0-18

Ages 19-21

Ages 22+

University of Miami

Miller School of Medicine

1489 West Palmetto Park Road
Suite 400
Boca Raton, Florida, 33486
United States

NAF Ataxia Center of Excellence

Member of the International FXTAS Consortium

Team

Henry Moore, MD

Medical Director

Matthew Chan Feldman, MD

Medical Co-Director

Rena Pressman, GCG

Genetic Counselor

Note: ** Clinic locations in both Miami and Boca Raton

FXS

Ages 0-18

Ages 22+

Ages 19-21

FORWARD participant

University of Miami Miller School of Medicine

South Florida Fragile X Clinic, Mailman Center for Child Development

1601 NW 12th Avenue
Miami, Florida, 33136
United States

Mailing Address: 1051 NW 10th Avenue, BRB-336 (M-860), Miami, Florida 33136

Member of the Fragile X Clinical & Research Consortium

Team

Deborah Barbouth, MD

Medical Director

Rena Pressman, MS

Genetic Counselor & Clinic Coordinator

FXTAS

Ages 0-18

Ages 19-21

Ages 22+

University of Michigan

The University of Michigan Fragile X Clinic

4260 Plymouth Road
Ann Arbor, Michigan, 48109
United States

Member of the International FXTAS Consortium

Team

Peter K. Todd, MD, PhD

Medical Director

Jessica O’Shea, MS, LCGC

Clinic Coordinator

FXS

Ages 0-18

Ages 19-21

Ages 22+

University of Michigan Hospital

Fragile X Syndrome Clinic, Division of Pediatric Genetics

1540 E. Hospital Drive
Reception C, Level 6
Ann Arbor, Michigan, 48109
United States

Member of the Fragile X Clinical & Research Consortium

Team

Christina Sloan-Heggen, MD, PhD

Medical Director

Jessica O’Shea, MS, LCGC

Clinic Coordinator

Note: The phone number listed is the Pediatric Genetics Clinic main office line. Ask to make an appointment at the Fragile X Syndrome Clinic. They will tell you what information needs to be faxed to them to make the appointment.

FXS

Ages 0-18

Ages 19-21

Ages 22+

FORWARD participant

University of Minnesota

Masonic Institute for the Developing Brain (MIDB)

2025 East River Road
Minneapolis, Minnesota, 55414
United States

Member of the Fragile X Clinical & Research Consortium

Team

Amy Esler, PhD, LP

Medical Director

Desirae Rambeck

Clinic Coordinator

FXTAS

Ages 22+

University of North Carolina

School of Medicine - Neurology, Movement Disorders Center - Ataxia Clinic

Chapel Hill, North Carolina,
United States

NAF Ataxia Center of Excellence

Team

FXTAS

Ages 22+

University of Utah

Department of Neurology

Salt Lake City, Utah,
United States

NAF Ataxia Center of Excellence

Team

FXS

Ages 0-18

Ages 19-21

Ages 22+

University of Utah and Primary Children’s Hospital

Fragile X Clinic

81 N. Mario Capecchi Dr.
Salt Lake City, Utah, 84113
United States

Member of the Fragile X Clinical & Research Consortium

Team

Victoria Wilkins, MD, MPH

Medical Director

Katie Reynolds

Operations & Administration

Brittany Gowarty-Weinstock, MA-C

Clinic Coordinator

FXTAS

Ages 22+

University of Washington

Department of Neurology

Seattle, Washington,
United States

NAF Ataxia Center of Excellence

Team

FXTAS

Ages 22+

University of Washington

Department of Neurology, Swedish Neuroscience Institute

Seattle, Washington,
United States

NAF Ataxia Center of Excellence

Team

FORWARD participant

Children’s Hospital of Pittsburgh of UPMC

Fragile X Center

3420 Fifth Avenue
Pittsburgh, Pennsylvania, 15213
United States

Team

Robyn Filipink, MD

Medical Director & Clinic Coordinator

FXS

Ages 0-18

FORWARD participant

Washington University

Fragile X Clinic

4444 Forest Park Avenue
St. Louis, Missouri, 63110
United States

Member of the Fragile X Clinical & Research Consortium

Team

Gregory Cejas, MD

Director

Michele Ruggeri

Clinic Coordinator

Fly With Me Fund

The Fly with Me Fund provides financial assistance for families to travel to a Fragile X member clinic of the Fragile X Clinical and Research Consortium (FXCRC) to receive the most appropriate evaluation and treatment services.

How It Works

The application must be submitted by a Fragile X Clinical and Research Consortium member clinic. To begin the process:

Special thanks to the Silver Family for their continuous fundraising efforts that make this program possible.